Test Results
Thank you all for your kind words, your thoughts and prayers. Despite not replying, I did read them all before I left to get the results.
Unfortunately, it turns out that I do indeed carry the Huntington’s gene. This basically means that while I’m not currently symptomatic of the disease, I will get it at some point in the future.
I’ll post in more detail once my brain has stopped throbbing - but I know that some of you were waiting for an update.
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Paul,
I appreciate that this must be difficult for you. I can’t even begin to understand how you are feeling or what you are going through right now, but I will stand by you and your family, and offer what support I can.
I wanted you to see what real courage is, instead of getting the idea that courage is a man with a gun in his hand. It’s when you know you’re licked before you begin but you begin anyway and you see it through no matter what.
(Harper Lee 1926 - (To Kill A Mockingbird))
Kindest Regards
Paul
Testing for Huntington is like playing poker. If you win, you know that you will probably not die the Huntington way, which is a very hard way to go.
But if you lose, and you lost, you got statistics and fear left.
The fear will never leave you again for the rest of your life, no matter how the treatment of the symptoms might evolve and even if a cure is found - which is not impossible.
I live with statistics myself, I got HCV. I survived a lot of statistics in the last twenty years. Science just changed his mind all the time.
There’s not a single human being knowing when to die or how to die. Most suicidal plans are failing - another statistic.
We do not know how many people with your genetic defect just never develop any symptoms. It’s the same with HCV. When I got my results, doctors told me I got ten years left on Earth. That knowledge changed dramatically.
All you got now is statistics. You still don’t know if you will be there when your daughter falls in love for the first time.
Like you did before.
As we all do not know. I KNOW that you have to live with the fear from now on - but keep in mind: You don’t know how and when you will die. Just like everyone of us.
And keep in mind: This is what “Reflections” is all about. Keep in touch with us!
I don’t really know what to say but these words flashed across my mind: When the going gets tough, the tough gets going.
My heart plummeted to the floor when I read your news. Oh Paul, I am so sorry you must go through this. I think most of us don’t know what to say. How can we relate? But we want you to know we care, and we understand if you need to take time for yourself and your family.
I wish I could find something encouraging but not cliche or trite to say. I’m reminded of a song by Lifehouse called Trying. “Let me be the first to say that I don’t have a clue, I don’t have all the answers. Ain’t gonna pretend like I do… Well I haven’t memorized all of the cute things to say but I’m working on it, maybe I’ll master this art form someday. If I quote all the lines off the top of my head would you believe that I fully understand all these things I’ve read?”
Remember what your wife said on yesterday’s post. You are so dear to your family and friends; you are loved, adored, appreciated, wanted, cared about. That is what’s important.
Hi Paul - I know this isn’t the result you were hoping for and I’m very sorry to know you will go through this. It does reinforce that we all must make the most of the time we have on this earth because none of us know when or how it will all come to an end. Hug a little tighter, kiss a little longer . . keep everyone you love closer than ever. You and your family are in my thoughts.
I am so sorry to hear your results. There is constant research and new treatments and cures for different diseases so we will all hope that something is found soon.
Hi Paul,
I have only just read your post and I’m so sorry to hear about your condition. My thoughts are with you and your family. I’m sure you’ll find strength over time, through those around you who love you, your family and friends, those who will be there for you when you’ll have a bad day… Thank you for sharing something so personal, it’s such a brave thing to do!
Being a new person to your blog you may have already mentioned this, so I’m sorry for not being able to dig deeper and find the answer. What made you decide to go in for testing?
The other day a friend of mine mentioned that one of his friends went to a geneticist to learn about their unborn baby’s genetic predisposition. I was kind of blown away that people could do that and also surprised that I didn’t know it was an option. It got me thinking about that movie Gattaca, which is set in the not too distant future when humans could genetically alter their babies. It’s set at a time when both unaltered and altered people lived together and it explores the kind of walls it threw up between them (and genetic discrimination). The point of the movie (or at least as I saw it) was to show that our genetic “faults” have value as they lead us to over compensate and develop into much more skilled and interesting people. It does seem to me that likely we’ll see the very future that appears in the movie because it’s part of our human nature. It also feels to me that the point of the movie may or may not be obvious to our society in this veritably inevitable future (even with a movie that predicted the impending genetic bias).
There would have been a time that you could not have known about your predisposition. You would have had a different experience as your symptoms manifested. The interesting journey you are currently on is that you have an opportunity to make a choice about how it will play out. You also have a chance to deeply explore what it is like to know you have a genetic configuration that you would likely change if you could. What if we could all change our genetic configurations to prevent baldness or less than 20/20 vision? What would happen to our tolerances for each other’s “imperfections”? What would happen to love? Would we push ourselves to reach for the impossible with the same fervor?